Part One – The beginning
My ME story begins on Friday 28th February 2014. Kind of. Maybe. I don’t actually know, not for sure. The onset of my illness is a bit murky. There is no one clear reason or definite date. But that is the day my first symptom presented itself.
Late that night I developed (some of) the symptoms of a UTI (Urinary Tract Infection). I remember the date because four days later I was meant to be flying to Belfast for a John Grant concert. I saw my GP on Monday and was prescribed antibiotics, but they didn’t work, so I cancelled my trip. The symptoms cleared up a few days later on their own, then I found out that the (urine) sample I had provided came back negative, there had been no infection. Which explains why the antibiotics didn’t work.
It happened again towards the end of March. Again, my sample came back negative but the doctor had already put me on antibiotics, which didn’t work (again) but the symptoms went away on their own within a few days. This happened another two times in the following months. Every time my sample came back negative for infection but my GP kept putting me on antibiotics. In her words “I know it isn’t an infection but I don’t know what it is so I’m going to treat it like it is an infection”. Helpful.
Sometime after the fourth occurrence (in June) my GP decided I had Interstitial Cystitis and put me on medication for it. Unfortunately, in early July the UTI-like symptoms came back, not always very severe, but this time they didn’t go away. Then, in mid-July I developed a new symptom (still involving my bladder). This new symptom came on after a particularly active day where I was volunteering, with my work, at a Quadrathlon event at Loch Tay. I was responsible for handing the participants their paddles for the kayaking, and spent around five to six hours bending down to pick up the paddles. This appears to have put strain on my already mysteriously damaged/not quite working properly bladder.
At this point my GP referred me to an urologist. Unfortunately I was unlikely to get an appointment until November. Under normal circumstances I would have waited until then. However, in early-November I was meant to be leaving the UK for four months. Earlier in the year I had applied for, and been offered my dream job/opportunity of a lifetime to live and work in Antarctica, from November 2014 until March 2015. I needed to be diagnosed and cured before November, so, for the first time in my life, I went private (for non-UK readers, as opposed to the NHS). My first appointment with the private urologist was just two weeks later. He wasn’t convinced I had Interstitial Cystitis but the only way to be sure was a cystoscopy. Yikes. That’s a camera up the urethra into the bladder.
So the camera thing happened mid-August (not as sore, scary or embarrassing as I had feared). He didn’t find anything. The urologist was happy. I was devastated. I still had no reason for my symptoms, and I knew I couldn’t go to Antarctica with any unresolved health problems, (there are no hospitals down there). At my cystoscopy follow-up appointment I was given a diagnosis of Overactive Bladder Syndrome and put on medication for it. I wasn’t, and am still not convinced by this diagnosis. I don’t have a lot of the usual symptoms, and I do have a symptom that doesn’t appear on ANY list of OBS symptoms. But in desperation I went ahead and took the medication he prescribed.
Then, later on in August, the medication started to work, not on all the symptoms, but I could see an improvement. However, I started to get additional, non-bladder related symptoms. I brushed them off as side-effects of the bladder medication and assumed they would go away, they didn’t. These symptoms included dizziness, lightheadedness, feeling faint, depleted of energy and extremely weak.
At this point I had to call my ‘Antarctic boss’ and let her know what was happening. She already knew I was being investigated for something to do with my bladder but I felt she now had to know that it was possible I wasn’t going to be better in time. I was given a generous deadline to let her know by (end of September), if I had to pull out.
In early-September, in preparation for Antarctica (in the hope I would be able to go) I started taking the contraceptive pill. This particular pill would help regulate (make better) my menstrual cycle, ideal for four months on a rock with no running water. Four days after I first took the pill I had a migraine, my first migraine for a very long time. My GP took me off the pill but I continued to suffer frequent migraines, two or three a week. None of the pain relief I was prescribed, nor the preventative medication, worked for me. Because of this I was eventually referred to a neurologist. My GP at this point thought I might have Multiple Sclerosis (MS).
As well as Antarctica I also had my regular full-time job. I love my job, it was incredibly fulfilling, but it was also becoming increasingly stressful from day to day. So much so that I was finishing each shift in a state of panic. On top of that I was also anxious about what would happen, regarding my job, when I returned from Antarctica. I had asked if I could take unpaid leave, and initially believed this would be fine. But then something happened that made it less certain, it took a long time for a decision to be reached, with some back and forth going on too – not helpful for my already frazzled nerves. Eventually I was granted the unpaid leave, which was wonderful of them. But, when it became less certain that I would actually be needing the leave, and because they would need time to find my temporary replacement, they also (understandably) gave me a deadline, for the end of September.
In mid-September I was due to travel to Cambridge for my Antarctica training week. However, with both the deadlines looming it was becoming painfully clear that I wouldn’t be well enough, not by the end of the month. I saw little point in wasting their time training me when I knew with almost absolute certainty that I wouldn’t be better in time. So the weekend before the training, I pulled out. It was THE most heartbreaking decision I’ve ever had to make. Not only was I completely devastated, I had come so very close to achieving the biggest dream I’d ever had, but I felt absolutely terrible for letting down the rest of my team.
It was a devastating blow, but I had to carry on and get on with my life, including my regular job. Since my bladder symptoms had worsened in July I had had a lot of absences from work. In fact I only had two full weeks at work between then and the end of the year. I was sent to an Occupational Therapist who instructed me, and my work, that I was to do less of the physical work (no lifting) and no driving the forklift truck. I knew something was wrong with me, but in the meantime I just soldiered on, what else could I do. I went to work as much as I could, often having to leave in the middle of the day, even when I was off work sick I still did as much work from home as I could.
After pulling out of Antarctica my symptoms continued to worsen, and new symptoms began to present themselves. It was quite a revelation when one evening I went out to dinner with friends and I realised I could no longer cope with socialising in a group. I couldn’t follow the conversation(s), the surrounding sounds, voices, laughter, cutlery scraping was overwhelming. I felt confused, and as though I was trapped in a fog. It was a scary and unpleasant experience.
By late-November/early-December I was really struggling at work. I was having problems with my concentration, I was forgetting things and I was making mistakes. I used to thrive on the high pressured environment at work but I found myself becoming less able to cope with it. I had a few conversations with my line-manager, and his line-manager, regarding what they could offer, to support me. I was given a few options, I could shorten my working week, I could work shorter days, or, and this came from our Chief Executive, I could consider taking a month off work, to hopefully give me time to rest and recover. At first I was horrified at the thought of taking a month off work. I feel guilty for taking just one day off work, but I agreed to think about it. At my next GP appointment, on Monday 15th December 2014, I brought up the idea. She agreed it would be good for me to take a break from work, and she signed me off work for one month.
I haven’t been back to work since.